The Macmillan Magic

Originally published in April 2003 icon

How Caring Professionals Work Together

Most people touched by cancer know about Macmillan Cancer Relief, and they understand the difference the charity can make to people living with cancer. Many will have had direct contact with Macmillan, or they may have a friend or family member who has been helped at some point in their cancer journey.

There are now well over 2,000 Macmillan nurses and these vital and respected healthcare professionals support people from the time they are first diagnosed with cancer and throughout their illnesses.

Macmillan nurses help cancer patients to control pain and other symptoms, giving advice and information on their treatments and psychological as well as emotional support. They also offer support and information to the patient’s family and carers. Unlike other groups - for example, Marie Curie nurses, who work in people’s homes - Macmillan nurses work in many settings: hospitals, the community and clinics, as well as in people’s homes.

All Macmillan nurses work closely with other health and social care professionals, by sharing their knowledge and skills and co-ordinating care between hospital and the patient’s home. They liaise with district nurses, GPs, social workers, as well as oncologists (cancer doctors), surgeons and other clinical specialists.

Macmillan’s Professionals

Talk to most people about Macmillan, then, and many will know at least some of these facts about the nurses. But, they may also have come across one of the many other Macmillan health and social care professionals.

Dame Gill Oliver (pic), Macmillan’s Director of Service Development, says: "To fulfill our vision of providing the best information, treatment and care for people with cancer, we need to provide a whole range of services. And to achieve this we fund a range of professionals who can help people in different ways at every step in their cancer journey.

"Macmillan is committed to listening to people affected by cancer, and to those who care for them. When we hear about gaps in cancer services in a particular area, we look to see how we can work with others to make improvements. This may involve establishing new posts or working with others to ensure that cancer patients can have access to the range of skills and help that they need."

There are currently more than 500 "non-nursing" Macmillan healthcare professionals, working in a range of capacities. Macmillan funds them for an initial period of three years; after this time, they are supported by the NHS or other partner bodies.

Macmillan doctors are one group of healthcare professionals. At the moment, around 300 are working in different ways in communities and hospitals. They work with patients and their families, diagnosing and treating cancer, managing pain and other symptoms, and offering emotional support. They also provide leadership and support to help other doctors work in the Macmillan style.

Some Macmillan doctors help plan and shape cancer services. For example, Macmillan’s leading cancer clinicians work with other experts to plan and develop ways of improving cancer services in their area, so that people can access consistently high standards of treatment and care wherever they live.

Macmillan senior lecturers are consultants who combine patient care with teaching and research. They teach medical students, doctors and other health professionals.

Dr Karen Forbes (pic), Macmillan senior lecturer, was named "clinical teacher of the year" by students at the University of Bristol Medical School, after introducing a four-week cancer and palliative care teaching course.

"Our medical students now have a better understanding of cancer patients’ needs and of their own role within the multidisciplinary team," explains Karen.

It’s All About Team Work

GP facilitators and advisers share skills and knowledge with other colleagues. Unlike other Macmillan doctors, they work with GPs and hospital staff, rather than having direct contact with patients.

In Powys, mid-Wales, Dr Diane Davis is one of a number of Macmillan GP facilitators helping to improve cancer services in this remote, rural area. "Since the project began, we have definitely seen better team-working and a growing knowledge about good cancer care," says Diane.

Macmillan nurses and doctors may be the best known of their professionals, but providing good, comprehensive cancer care requires a team approach. So what about the other members of the team?

People living with cancer may often benefit from the advice of a Macmillan dietician. Nutritional problems can occur due to the side effects of the treatment of cancer itself. The problems may include loss of appetite, nausea, sore mouth and taste changes. The effects may be long lasting and require a new diet or way of eating.

"Eating is a social and pleasurable thing, and when you take that away from someone it can be difficult. Often, just talking about the anxiety connected with eating can be very useful."

Macmillan occupational therapists help people restore and improve their ability to perform day-to-day activities. At the Borders General Hospital, near Melrose in Scotland, Macmillan occupational therapist Jennifer Bramhall describes an important part of her job as helping patients identify problems. Once they have done this, they can set goals, solve problems and be as independent as possible.

"It could be that their aim is something simple, such as getting home to sit in their own chair," says Jennifer. "Things like personal hygiene, dressing and mealtimes have a different meaning when people are not well. I do environmental assessments, at people’s homes or in the hospital ward, so that we can see if they need special equipment. It’s about helping people regain some control in their lives."

Macmillan information and support radiographers, like Mark Williams (pic), work closely with clinical oncologists (doctors who prescribe radiotherapy). Much of Mark’s job, at London’s Middlesex Hospital, involves providing information and advice.

"Lack of information is one of the most frequent complaints made by patients," says Mark. "All patients are likely to benefit from effective information and communication regarding their treatment."

"After receiving their diagnosis from a clinician, patients often need things explained again or in more detail. People have preconceptions about radiotherapy. They fear that they are going to be burnt and lose their hair - no matter what part of their body is going to be treated."

Mark also provides a great deal of emotional support, from diagnosis through any aspect of their treatment and beyond. "I talk to patients and their families - people need someone to talk to about their worries, and I will refer them to the appropriate specialist if required. I also help sort out any money issues, like accessing Macmillan patient grants and state benefits."

"Other important parts of my role are monitoring the information needs of patients, being involved in research and quality assurance, and sharing my specialist knowledge; not only with patients but also with other medical disciplines within the trust," he explains.

Financial Help

As Mark mentioned, people may need financial advice and they can turn to Macmillan social workers like Keith Barnett (pic). "The truth is that a cancer diagnosis often leads to financial hardship," he says.

"Some people may lose their jobs as a result of their illness. Others may have to dip into savings to pay for carer support or transport costs for their treatment. This is where Macmillan comes in. We can alleviate some of the money worries that people face, and allow them to focus on their treatment and on getting well."

Professionals such as Keith must apply for financial assistance on behalf of the person with cancer. A medical report should be included, and there are financial criteria to be met. The application form is simple to complete, which Keith feels is especially helpful.

’It’s very clear about who exactly is entitled to the financial help, and steers you through the process very well. There hasn’t been a single time when I’ve had an application turned down, and the decisions are always quick," he says.

The applications, which he makes two or three times a week, are always part of a wider financial assessment. For both Keith and his colleagues, it is vital that people affected by cancer receive all the help they can. Benefits available include, Disability and Attendance Allowances, Income Support, Incapacity Benefit (sick pay) and Invalid Care Allowance. Each is designed to meet specific needs. While some, such as the Invalid Care Allowance and Social Fund Payments are discretionary (or "means-tested’) others, such as sick pay, are statutory.

But as Keith points out, "The trouble is that many people don’t know what they’re entitled to. Also, they may find the application procedures baffling and time consuming - an extra and unwelcome burden when you’re ill."

Making A Difference

To describe all the professionals who make up the Macmillan team would probably take up this entire edition of icon. There are the physiotherapists, who help improve muscle function and mobility; clinical geneticists, who advise and counsel patients about inherited risks for certain cancers; ethnic liaison officers, who work alongside other healthcare professionals to ensure people from ethnic minorities can access good cancer services, and many more...

So, when talking to people about Macmillan, don’t be surprised to hear about the difference that one, if not more, of these many professionals has made to a person with cancer. This is a vital part of Macmillan’s approach. As their Chief Executive, Peter Cardy (pic), puts it: "The Macmillan team aims to help people throughout their cancer journey. This requires different skills, different disciplines, all working together for a common vision - improving the quality of life for people living with cancer. The care of people by people is our business."

With thanks to Macmillan News for their help with this feature.

Tips For Carers

Look after yourself

Don’t pigeonhole yourself into the role of sole carer. Remember to ask for help if you need it and to view yourself as not just a "carer". Get the support of the healthcare professionals. For example, some Macmillan centres offer complementary therapies to carers. Others can also advise or help you apply for a financial grant for a respite holiday

You may benefit from joining a local support group

Call Macmillan CancerLine for further information and support on freephone 0808 808 2020 (Mon to Fri, 9am to 6pm)

Macmillan - Looking To The Future

Chief Executive Peter Cardy doesn’t make plans for the year ahead - but for the next 10 years, and these are some of the things Macmillan will be concentrating on:

Developing primary care cancer services (GPs, district nurses, community cancer nursing teams, community palliative care teams) because "more successful treatment means more people living longer. Therefore we need to be doing what we can to make sure that people living with their cancers at home live as decent and dignified a life as possible."

Macmillan’s Gold Standards Project. "We’re putting a lot of effort into this project which is aimed at encouraging GP practices to reach a high standard of care for people with cancer. There has been a pilot project running in the north of England for some time, and we will be expanding it this year."

Continuing to develop relationships with social care organisations; particularly social services departments. "People with cancer tend to get looked at as people with cancer, and the rest of their needs to carry on living and managing a household, getting to the shops, carers getting a break etc. tends to get overlooked in the focus on acute treatment. It’s important stuff to us and so we have a number of developing carer support and befriending schemes. We’ve got developing schemes scattered around the country to enable people to access the cash benefits to which they are entitled."

Continuing our building programme. "We’re carrying on building treatment and information centres and, apart from making those rather fine and beautiful places, our intention is to try to raise the standard for the NHS as a whole. We want people who are building cancer buildings elsewhere in the NHS to look at ours and think: ’Mmm, so that’s how you build a good cancer unit. Let’s see if we can put a bit more money, space, light or better furnishing inside ours’. As with everything we do, we are not simply trying to do the thing itself, but to pull along better practice around it."